Bottle o Tamoxifen
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Dear Sharon,
Congrats on your team's effort! For me, the feet thing passed, but I also had my first case of plantar fasciitis. When I row, I push like heck on the floor boards to get a good stroke.
Basha
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Hi All - Been off the boards for quite awhile but thinking of all of you and hope this post finds you doing well. I have not caught up on the posts other than the last 2 pages.
Virginia - sorry to have heard about your father. There never is a good time. I hope there is comfort in having been able to visit with him before his passing and with the memories of happy times together.
Ellen - I wish there were a way we could send you some electricity. Can't imagine power being out for that long. Glad you are safe. Right attitude about "stuff" being able to be replaced. Hang in there.
Layne - interested in hearing more about your experience with Lipitor. Now that active treatments are behind me for BC it is time to deal with my high cholesterol ....
I'm taking 20mg of Tamox each night and continuing to do rather well. Most common SE is that I tend to be red-faced a fair amount although not really having hot flashes per se. Do have an occasional night sweat. Other than that, I haven't had a period since starting Tamox. Anyone else have that experience?
Joan
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Dear Joan,
No period either since starting Tamox 10 months ago. But I am 57 and it was high time.
Basha
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Evening ladies! It has been an interesting week.
Amber - I started on the Tamaxofin on 6/16, one week after I stopped rads. I just refilled my 4th bottle - I sent away for mailorder ... so I'm in it for the long term now! I take one pill, right before I go to bed. I am going to ask my onc at my next appt about the test that measures your body's metabolism rate. I had asked I generally last time, but I was too excited about the good news from my BRCA results and didn't pursue the testing.
I finally stopped having to use the restroom every 2 hours by Friday am (2 days). I am very grateful that I work from home. I also did not go to an event on Thursday night because I was nervous about leaking! This is the first time I have experienced this. My next onc appt is mid-October and I'll be sure to mention it to her.
Someone had asked about eating soy products. I met with a nurtionist at Boston Medical while I was having radiation. She suggested that if soy is one of the first 4 ingredients, try to avoid that product because of the Tamaxofin. She said that I won't be able to avoid it all together and not to obsess about it. I now buy alot of my stuff (crackers, bagels, peanut butter) at Trader Joe's. I read alot of labels and find soybean oil in so many items. Since I tested 90% on the ER/PR hormone stuff, the nutrionist also suggested that I eat only chicken/beef that is hormone free - Perdue chicken is hormone free. I buy my cheese at Trader Joe's, and it is labeled if it is hormone free. Fortunately, the 1% milk that my family drinks is hormone free and has been for years. The nutrionist also suggested only eating fish twice a week, the most. Primarily due to the mercury level that is found in alot of fish ... now doesn't that sound appetizing! Don't you just wonder about what they put in our foods. How scary.
Basha - when my son was 12 we had to purchase special inserts for his feet cuz he had plantar faciitis. It's pretty painful, he could barely walk when he first got out of bed in the am. He still wears them daily in his sneakers (of course, we had to purchase new inserts as he grew!). It must be painful for you when rowing?!
Have a nice evening!
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Murph, I know you are glad to be done with this monthly cycle...I do appreciate you sharing about your food choices...I notice that soy lecithen is in most vitamins...did you nutritionist mention supplements. I will look at those ingredients list and start counting. Tyson chicken is big in the south and I buy it...it say hormone free and no additives....meat is another question...I never really ate much to begin with...so I wonder if it had much to do with My BC...
Ladies the weather is gorgeous these evenings....I have two mixed labs....they are big and strong, since my surgery I find that I can only walk them individually....so I get a double dose of walking, this evening, I felt like running short spurts...and it felt great...I haven't felt like running in years. hopefully my tamox joints will hold up.
I was up most of the night just plain hot and sweaty....like a long hot flash...it continued thru shopping for groceries. when I put the groceries away.(10am)..I turned the AC down to 68 and boy did it make a difference. I turned it back up to 71 before the kids got home....no use in freezing everyone.
hope everyone is doing super!
amber
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Good morning! I t is absolutely a picture perfect day here, only wish it would stay like this. I don't want the cold weather to get here - I don't want to turn the heat on!
I did tell the nutrtionist and my medical oncologist that I take a fish oil pill and a multi-vitamin with dinner every evening. They both said that was ok. However, I just checked the ingredients on my multi-vitamin and guess what! The first ingredient is soybean oil. Just a little frustrating. I have an appt with my surgeon on 10/2 and the oncologist on 10/16. I guess I'll stop taking the vitamin until I hear differently from them. Are there multi-vitamins out there that do not contain soybean?
I stopped using ground beef years ago in favor of ground turkey. I make just about everything with the ground turkey - meatballs, tacos, meatloaf (don't make meatloaf often, isn't my kids favorite meal). My daughter's college roommates love the turkey meatballs that I make for them. As long as the packaging says no hormones/additives, it should be okay for us.
Have a great day, everyone.
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Hey Ladies!
It's been a while since I posted so I'm not sure if I'll get everyone -- not that I'm not thinking of you, just fuzzy-brained.
I had the interview yesterday and I think it went well. I'll know something on Friday. I'll keep you posted.
Layne,
Nice to see you! You're always full of good news. In fact, I just read an article that I think many will be interested in. It's on MSNBC about how acupuncture works as well as or better than Effexor. You might want to check it out.
Also, Layne, if I have to come to DC to help my mom after she has surgery (on 10/9, to remove her spleen laproscopically), I'll let you know. It would be fun to get together -- walk around the mall maybe (and that can be THE mall or Pentagon City mall!)
To everyone else: Thanks for the good wishes on the interview! They must have worked. I think I'm in good shape. Also, if you watch Judge Judy, my step-daughter will be on the show Thursday. She had a dispute with her half-brother over their grandmother's house. She lost. Her name is Stephanie.
Hope everyone is having a great Tuesday.
Deb
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Deb
Glad your interview went well! I can't wait to hear the good news... that you got the job!!
Harley0 -
Hi... an update on my u/s... it's now scheduled for Thursday, as in... the day after tomorrow! Seems there was some kind of mistake... My surgeon ordered a Mammogram, not an u/s. My insurance case manager called me, because I had told HER that I'd be getting an u/s, and now she doesn't want to approve the mammo.
I called my surgeon, and he confirmed that it was supposed to be an u/s, so they called the hospital and re-scheduled it for Thurs.
So now I will STILL have to wait til Oct 10th to get the results!
Hugs,
Harley
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Thanks for the info Layne. My cholesterol hovers around 250. PCP was about to start me on Lipitor when I was diagnosed with BC; said to take care of that first and then we would revisit ....
I think I missed that you are in the Washington area. Will be nearby in about a month as DH and I are headed to Homecoming weekend at the Univ of Maryland.
Anyone in Las Vegas? Headed there for two conferences in a few weeks.
Joan
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Jisman - How are you doing? I haven't been on for awhile, til the tamox started this leg, bone pain. Other than that I am doing well, and I think this week I have made the turn to getting the last weight off that I gained during chemo. I see the med onc on Friday for a follow up.
Layne - I decided to try and stay away from soy, good tips about the chicken. I haven't done a lot of red meat since chemo.....did more than normal then b/c my RBC was so low and I felt pretty sluggish.
Hope all the rest are doing well....the fall weather in Virginia is gorgeous....not too hot, not too cold....
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Hello Ladies,
I've been reading, just no time to post. I've been feeling overly exhausted for the last month or so. I've been on the train for 6 months (tamoxi-train) and like a switch, I think I'm now in chemopause, or very, very close to it. Although I'm still having all the PMS and cramping, just no period... I see my rad onc on Friday for my 6 month follow up and I've got a ton 'o questions for her.
Layne, good to see you back! I love your long posts! They are great reading.
Harley, rats about the run around. That stinks. At least you are now moving forward. Good thougths coming your way.
Deb, good job on the interview. I'll keep good thoughts for you too!
Murph, thanks for the nutrition info. I have a friend who gave me a book on the macrobiotic diet and cancer. It is just too extreme for me, but I do refer to it from time to time. I mean, who can resist a home grown tomato this time of year? Really, are tomatoes that bad? (the macrobiotic diet says no tomatoes).
Basha, I hope your rowing goes well this weekend!
have a nice day ladies. Barbie
p.s. I was invited to a shoe party! Can you believe it? It is a donation party, so I'm supposed to bring one to two pair of gently used shoes and they will see that they are donated to people who need them. I love the idea, and I'll try to go if I can.
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Barbie,
That shoe party sounds like Karma has come back around to you. Now you can let someone else get the shoe bug!
Layne,
I'll send you a message if I'm coming. But it sounds like you might be gone when I would need to be there.
Harley,
Hang in there! At least now you've got a date certain for the u/s. But those docs and insurance people never seem to be on the same page. Right hand doesn't know what the left foot is doing, kinda thing.
Joan
When did you graduate from Maryland? My cousin is a professor there now. I grew up in Alexandria, family still there.
FYI, I just started my 4th bottle (get it quarterly) of the tamox. Sometimes it seems like I'll be taking it forever. I've got 3 marks on the side of my pill organizer so that's 15% through the 5 years but geeeeezzzzz, will I ever get to the end of this train ride? And thanks for all the good thoughts on the job thing. I won't know anything until either late Friday or Monday. I'll keep you posted.
Ok, whining over.
Deb
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Barbie and Deb,
Thanks for thinking of me!
I'm getting kind of nervous, and my u/s is tomorrow.
Barbie,
That shoe party sounds like a lot of fun!!
Deb,Please let me know about the job. I'm going to be looking for another job too, because today was just the day from HELL! My boss read me the riot act about asking for time off, when the ONLY days I've asked for so far have been dr. appts. and tests and even surgery.
But this time, I had asked to take off Oct 3 thru Oct 6 since we are going to visit some friends in Cocoa Beach. We had previously asked for Sept. 19 thru 22, but our friends were having visitors from the U.K., and didn't have room for all of us. So we are going in Oct. now. Anyway, my boss scheduled me to work on Sept. 19 anyway, and when I got there, I explained to her that our trip had to be postponed, and we'd be going in early Oct... Today, I see that she scheduled me to work Oct 3. When I mentioned it, she took me off the schedule, and she got pretty nasty! She said that I need to give her SIX weeks notice when I need time off!!
So now I will probably be looking for another job. This was only supposed to be a 'little p/t job', but it sure has become aggravating!
Thanks for letting me get that off my chest!
HUGS to everyone,
Harley
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Layne, that is good that your internist is taking such good care of you...I live in a small town and there aren't many good doctors and the good ones don't take new patients, so I have leaned on doctor friends (since I am a nurse and several doctors are at my church, and I used to work in the ER and I could pick their brains if I had a problem)...so until this BC dx I haven't been to a good doc...even my gyn want run routine labs like hormone levels, CBC and such...I think insurance companies put the docs at a disadvantage.
But my med onc is wonderful...he is the best doc I have had in a long time.
thanks for the chicken info...I didn't realize they were all hormone free...
Harley, I will be thinking about you today...hope you get info on the spot.
Joan, have a great time at your homecoming at univ Maryland
Sharon, great on the weight loss, hoping the bone pain lessens, I have it also, but it comes and goes, I am doing detox bath soaks and that seems to be helping. I have put on about 8 pounds since starting tamox....and I am exercising more...so I am on the watch of weight!
Barbie, I like the shoe party as well, sounds like a nice thing to do for those who need them, I like to hand down things that others need too. I hope you feel more energy and that your rad onc can provide some answers.
I felt bad after rads for quite a while, yet my iron was depleted, the med onc started the iron supplements, I added CoQ10, ...I am less energetic if I skip a day of either, but I believe they work together....CoQ10 helps the mitochondria in the cells and oxygen utilization, while hemoblobin, oxygen and iron need each other to work properly, I feel so good that I have added jogging spurts to my walking routine,
Deb, good luck with the job, I like you and Harley, have had to focus some on that part of my life, I will start this Mon. with orientation then at the nursing home 1-2 days a week. where I live the jobs are slim...I could travel to nearby cities to look, but if I can get by especially with the price of gas, by just working some extra hours around my town, that will suffice.
Harley, good luck with work as well! and take that time off anyway, you deserve it.
Well Hi to everyone else, Lynn, Donna, Murph, Virginia, Basha, (and All I forgot)....Lord there is a train of us....Help us all Dear Lord!
Hugs with Love,
Amber
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Amber,
Thanks for thinking of me. The u/s went well... the tech was very nice, and when I told her that I had bc last year, she said "oh, you are so young!" She was so sweet! But, no, she didn't tell me anything about what she may have seen. She just said that she got all the pics she needed and "did I have a follow up appt. with my surgeon?" So, I go back to see my surgeon on Oct. 7th.I am going job hunting tomorrow. My boss took me off of Saturday, so if she calls me and asks me to work Saturday, I think I will have to say that when she took me off the schedule, I made other plans... She just went berserk on me yesterday! Good Luck with your job, Deb & Amber!
HUGS
Harley0 -
Harley - thinking of you, and sorry you have such an uncaring boss!!!
Amber - sorry to hear about your wt gain on tamox...I think it is so complicated with chemo changing our hormones and I am about to turn 50, so stuff was starting on its own. I am feeling much better about things since I can get into some of my old clothes
See the med onc today.....I also have seen the signs for flu shots...guess I may go ahead and see if they will give it to me. I have always done it at school, but that is usually not til the end of Oct.
Glad for the weekend...no athletic events...so I am off ALL weekend!!!!
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oh yea...here's a funny - We get up this morning...and the dh says hey you have enough hair to have bed head!!!! Have a great day everyone
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Sharon- LOL, that comment made me laugh out loud...thanks for that. Not much news to report on this end. Still struggling with missing my Dad, but I guess that will be forever now...
It's gloomy and rainy here in NJ.
The other day they did a "competitive assessment" of ice cream which meant they had about 20 ice creams out on the bench for tasting. Now, mind you, I DO NOT WORK ON THE ICE CREAM category. But, let me tell you, I was shoveling that ice cream in my mouth so fast I was practically hyperventilating...
Ok girlies...thanks again for the outpouring of support...you all mean a lot to me!!
Hugs,
Virginia
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Sharon - too funny! Thanks for sharing that funny moment with us.
Virginia - it is good to see your post. I was so tired the other night, and a friend stopped by, and right in the middle of a conversation with him I interrupted him and said "let's go to dilly bar!" I blurted. He looked a little confused then said "Dairy Queen?" I'm so glad he understood because I was so tired I couldn't even find the words, but apparently, not too tired to eat ice cream! I'm very jealous of your work environment!
I've got an appointment with my Rad Onc today - 6 months post radiation. I've got a list of questions for her, but the biggest one is about this increasing and unrelenting fatigue! If nothing else, maybe she can order some blood tests - it is probably an iron deficiency or something on that order - but I need to get to the bottom of it. It is becoming debilitating. Last night I almost started to cry because I needed to do laundry and I just couldn't muster energy. So, I sucked it up and did one load to get me through a few days.
Hope everyone has a great weekend!
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Harley,
Glad that the u/s went well. I do wish the techs would tell you something! I think that they do so many that they know what they are seeing.
Amber and Harley,
We'll jump in the job searching pool together. I won't know anything until late today or Monday. So we'll get through the weekend, go to the football game tonight and watch our daughter march, then the debates. I have to believe that everything happens for a reason and that something will come. As it will for you guys too.
Virginia,
It's great to see your face again. You crack me up! But I have to tell you that seeing that you are taste testing brings back memories for me. Except for me, it was beer! I can't drink it any more. I got so sick of smelling/tasting it, I just can't any more!! My mother would tell people that I drink beer for a living! Nice mom.
Barbie,
Glad that you are going back to the doc. But I have to tell you that it was at about 6 months before I started to get my energy back. So hang in there. It will get better.
Ok, so I've worked until 3 pm the last few days. Do you think anyone gave me a break for lunch?!?!? It's crazy the way things work around here.
Have a great day all! Smile -- that's what you make me do.
Deb
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I'd be in BIG trouble if we owned a Beer business...
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Virginia
Hi! I see you got a new Avatar... nice hair!! I've been thinking of you, and hope that, in time, your happy memories of your Dad will comfort you. ((((HUGS))))
Sharon,
Glad that you can get bed head now! LOL I also have enough hair to have the mussed look, but still not enough to make it look all smoothed out, like I did this on purpose.
Deb,
Thanks... I also wish the tech would have told me 'it looks like a cyst', but she didn't. In fact, when she started to scan my outer breast area, I asked her "can you tell if it is a cyst, when you are scanning it?" She said YES... and smiled.
Let us know when you hear about the job... I'm hoping you hear that you got the job, and soon!
Hugs
Harley
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Hi all - Last night I noticed my right breast was swollen and warm....had the onc visit today anyway so told him I was a bit lopsided. Anyway he goes and gets my rad onc and they decide it may be mastitis from the radiation....they say it occurs sometimes, but is a mild case. So I have 6 days of steroids to take......that should be fun - I'm kidding!!!!
But they both said it may also help with the joint pain also. I was only 1 pound away from my first onc weight today...hope the steroids don't mess that up again. The last time I had this type of steroid pack was a long time ago when I got a case of whooping cough from a student and I was up for about 3 days and had the cleanest house on the block!
It is rainy here.....so we are going to paint the dining room tomorrow. We need the rain, so can't complain.
I just got asked to come and share my bc story with the local womens group......will be a good warm up for my breast cancer and exercise presentation to the club industry convention in Chicago. I think giving the talk to an all women's group first will be good.....hopefully won't be too emotional.
Have a good weekend.
Sharon
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Sharon, it is nice that you noticed the swelling and warmth prior to your appointment, it seems sometimes we get the symptoms after we se the docs. those steroids do make you feel like superwoman! Hope you are able to get some rest...and so glad you are able to share your story.
Amber
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Is there an adjustment period with tamoxifen? I've been on it for five weeks and notice fatigue.Does it improve at all?
Thanks!
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Mary,
As with the rest of this journey that we've been on, yes, there is an adjustment. I think for most of us it was about at the 3 month mark that things started to level out. I'll suggest to you what some of the gals on this train have done -- they track their s/e's on a chart. I know that it helped me. It helped to know when something was happening and when it was stopping. I've just started my 4th bottle (I get it quarterly) and most of my s/e's have pretty much gone away. Hang in there! And remember that we're here to help. This is the BEST group of women!!
Deb
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Hi you all I have not posted in a while. I have been on tamox since Jan 08 and I swear I think the se's get worse. I wouldn't know if something was se or something else. I am still having hot flashes and night sweats plus bone pain, cramps in my feet, stomach trouble, constipation and bladder empting problem, a cateract, i have lost about 50 lbs, memory loss and the list goes on. I go see my onc on tues and I will talk to her bout the weight loss cause my family is starting to get worried. This is becoming a very long train. My cabose is dragging! LOL Bless all. Feedback Please
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Mary,
I think if you read thru some posts you'll see Tamox can take you for quite a ride. For me, certain symptoms pass, like joint pain, and others increase; hot flashes. Good luck.
Off to race, my dears. Think of me at 11:30 storming thru the rain.
xxxxBasha
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Sharon S - Good to hear from you. Having been on the same chemo schedule, I feel a special bond! I'm doing pretty well. Haven't yet been able to integrate my old life (working full-time at a job that also requires a 40 minute commute each way) with the changes I need to help keep BC away. Gotta figure that out.
Deb - It is actually my DH that graduated from Maryland rather than me. Believe he was a '86 grad.
Amber - what level of CoQ10 do you take each day?
Mary - I've been one of the fortunate ones with limited SEs since starting Tamoxifen at the end of July. Just like so much of the other aspects of our BC paths .... Everyone is different.
Joan
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